This is a blog I've started to help me deal with the diagnosis of having gastroparesis. It was suggested to me that a blog/diary might help me feel better by venting my frustrations and struggles. Also, I hope I can help others who may have the same thing through my own experiences.
For more information, please email: emilysstomach[at]gmail.com or follow on Twitter: www.twitter.com/emilysstomach or like us on Facebook: http://www.facebook.com/emilysstomach

Thursday, April 25, 2013

You’ve Been Diagnosed with Gastroparesis, Now What?

I wrote an entry about advice to those who have just been newly diagnosed with Gastroparesis but I wanted to make an entry of my top five things, I believe, you should do after being diagnosed. It contains a lot of good advice from a few members of a Gastroparesis group I was in as well. The links will be in all caps and in bold. Just click on them and they will take you to a different link.

1. You Have Named Your Illness - How to Help Family/Friends Understand

First, it's going to be hard for other people to adjust to the fact that you have an illness and it has a name. It's no longer invisible. People see you and it is NOT all in your head. However, having an invisible illness can be tricky because people often don't understand what they can't see. It can be difficult with all of the extra stress an invisible illness can put on you, so, I am going to recommend two of my blog entries that you should read and maybe read over with again with friends and family.

Please remember that people react differently to different situations. If people seem angry with you or tell you that it's all in your head, just give them some space. I had a friend who was very angry with me before I was diagnosed because I kept blowing off going to the movies, going out to eat, even going to the theatre! She was angry with me and called me flaky. She stopped calling me. After my illness and after reading my blog, I got a message from her on Facebook. She apologized to me! She said that she knew I was sick but not how sick. So, be patient. The important part is that you found out what's been making you sick and that's a very big step!

The first entry you can find by clicking HERE. is, "How to deal with People Who Say, 'But You Don't Look Sick.'" It's going to happen quite a lot, and you'll need to learn how to be patient with those people. This entry will help you and prep you for when that time comes. I know it's not easy to deal with, believe me, I've dealt with an awful lot, but it will help get you through the worst of it. I did not write this article, but I wanted to share it because it was helpful.

The second entry you can find by clicking HERE is, "How to Talk to Someone with a Chronic Illness; What You Should and Should Not Say." Keep this one to give to people as well. When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful. Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships. There are some tips in that entry to keep in mind when talking to a friend living with an invisible illness. I did not write this article, but I wanted to share it because it was helpful.

I'm going to add one more entry that will help you as well. It's called, "Advice for Caregivers and Loved Ones Who Witness Loved Ones Suffering with Gastroparesis." You can read it by clicking HERE.

2. Look Up Resources For Support

It's really hard to get the diagnosis from the doctor telling you that you are chronically ill. When I was diagnosed with Gastroparesis in March of last year, I had never heard the word "gastroparesis" before then. After I got home from the hospital, I went online to see what I found find out about my new illness and find a support network. When you're told so many times that you make up your illness or that you look great when you haven't eaten in a week and barely have enough energy to take a shower, it hurts. It hurts emotionally and physically. You can talk to a friend, partner, husband, wife, or neighbor. It does help to talk and get those feelings out.

I've found what really helps the most is to talk to people with the same illness that you have. You don't have to explain yourself when you break down and vent, or if you burst out into tears because of a song on the radio. You don't have to hold anything back when you tell them how sick you got after eating something you shouldn't have. They don't push, probe, or anything like that. Most of all, they DO NOT judge! I have compiled a list of great online support groups and resources, and I update the list when I find new groups. The list contains Facebook pages, websites, blogs, and mailing lists. It's important to have resources to not only research GP, but to find people like you to talk to. You can find the list by clicking HERE. This ties in with my next point, you need to be your own advocate.

3. Be Your Own Advocate

Research your illness. Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources. It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor. I was asked today, actually, by the nurse at an urgent care clinic near my house what Gastroparesis was. I explained it to her and she looked a bit bewildered. But hey, I'll be happy to spread awareness any way I can. If you find a doctor you know, like, and trust, keep them!

Ask Questions about your illness! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. If you have any further questions after seeing him, write them down and call his office to leave them with the nurses. Your doctor will get to answer them when he has time.

Make sure the medications are helping you, not harming you. When I went to the Mayo Clinic, I was on about twelve different medications. The doctor stripped me off of almost all of them. Two of the medications actually did the same thing as well as could paralyze my stomach! The other medications had side effects that were just awful. You can find out more about Reglan by clicking HERE has irreversible neurological side effects! I was never told stuff like this! Be sure to check with your pharmacist and your doctor to make sure the medication you have is right for you.

4. The Gastroparesis Diet Plan

You want to make sure that you lower your risks of getting a GP attack. I wrote an article containing the diet plan from Mayo that I received from there, plus it links to Pinterest Boards with GP friendly recipes - like smoothies, juicing, and friendly food. Be careful though, everyone is different. What works for someone may not work for you. It's trial and error. It can be found by clicking HERE.

The diet is important because it will also help you determine what you can eat and what you can't eat. Again, no two GPers are the same. I can tolerate Yogurt on good days and most people with GP can't tolerate dairy. My advice is to keep a food journal. Log what you eat, what time you eat, and how much you ate. Also, record any GP attacks you have and the time they start and end. This will help you identify patterns and triggers in your diet. It's helpful and it cuts back on testing at the doctor's office.

5. Don't Give Up!

This is by far the MOST important point! You are NEVER alone so don't give up! Find someone to talk with, to help you through those rough times when you need it most. I have had some really rough days when I wondered what kind of life I was going to lead with this illness. What kind of life can you have if you vomit six to eight times a day? But, it IS a life. My life. I'm lucky to have it, so I plan on fighting for it. I'm excited to pass off a pair of boxing gloves to you so that you can fight along side me, fellow GP Warrior. <3
For more advice from our Gastroparesis Facebook Members on how to cope with being diagnosed with GP, please click HERE.